An App a Day
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At the end of February, I joined a mobile app development focus group of MS patients hosted by two PhD students from the University of the West of Scotland.
Background
As part of their PhD, Eilidh MacDonald and Luke Cerexhe are collecting opinions from MS patients about what might a mobile app for tracking symptoms look like. I joined a video conference with Eilidh and Luke and three other MSers to discuss our ideas and opinions.
This subject interests me greatly. When first diagnosed, I had no idea of what to expect. What does normal look like now? For the first year or so I religiously recorded my symptoms and mood every day. I was using the Notes app on my iPhone which meant I could update it any time.
Ok, Now What?
Looking back at those notes, I settled into a pattern of going through body parts, describing any sensations and then trying to summarise how I felt overall. I tried to rate things on a somewhat nebulous scale of ok / slight / intense. Not very scientific. Over time, I tried to compare how things felt with the previous day.
All very laudable but essentially what I have is over a year’s worth of daily musings. There’s no easy way to track patterns or consolidate the symptoms into an overall picture. It felt like a useful thing to do at the time but looking back, it’s a lot of raw data which would need some lengthy analysis to make useful.
Features and Functions
That’s where an app would be especially helpful. The consensus was to have something that lets us quickly enter symptoms and intensity, which could then provide a trend. This would be hugely beneficial when we see our MS nurse or neurologist. Trying to remember the preceding six or 12 months would be difficult even without any MS induced brain fog. There’s recency bias when you feel good in the days before the appointment, perhaps forgetting how bad symptoms might have been a few months earlier. How are you doing? Oh I’m fine…
Having an app that could quickly summarise symptoms over several months would make these appointments more rewarding. Rather than trying to recall what had happened, the app could present it for us.
It would also be useful to track things like activity and conditions. Some people find the weather or exercise ease or worsen their symptoms. Therefore it would be useful to have a way to link symptoms to surrounding events which would help identify any triggers.
Another suggestion was to provide reminders. In some cases, MS can lead to dehydration so an app could provide reminders to drink water. Similarly, an app could provide a reminder to take medication. Whilst there are other apps that can do this, having all MS related reminders in a single place would simplify the set up.
What Should an App Look Like?
Everyone agreed that the app should be simple to use and have a clean, uncluttered appearance. As an iPhone user, I like the simplicity of Apple’s interface. I use the Reminders app extensively and I like the appearance with large buttons and one-click actions. There was a suggestion to minimise the amount of typing, with dropdown menus and sliding bars to rate symptoms. Given that some MSers have vision issues, there should be good colour contrast and clear text.
What if symptoms are unchanged from one day to the next? There was agreement that we wouldn’t want to enter everything and rated as unchanged. Maybe a single button that says “no change” would streamline things.
How often?
Frequency of use was raised, and I see the app being used on an ad-hoc basis. As mentioned, I recorded everything in the first year but don’t do that now. However, I would like to be able to add data as and when something different happens. Over the last three years, I’ve developed a baseline of my symptoms so only want to record any variations of these.
The Next Step in App Development
The call concluded with some general discussion and inviting us to be involved in the next stage. Eilidh and Luke mentioned that their original plan was to look into MS and physical exercise, something that I would also have been really interested in. Unfortunately, as with so many things in the least year, the COVID-19 pandemic meant they had to pivot to something that could be done remotely.
Nevertheless, the work they are doing will have a tremendous benefit to people both newly diagnosed and living with MS. Anything to make handling the condition and its unpredictable effects easier will be hugely welcome. Eilidh and Luke will be back in touch in May to progress to the next stage. I’m really looking forward to seeing what they come up with.
You can find out more about this study by contacting Luke (Luke.Cerexhe@uws.ac.uk) and Eilidh (Eilidh.Macdonald@uws.ac.uk) at the University of the West of Scotland.
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